The Experience of Patients Living with Multiple Myeloma: Unmet Needs Associated with Diagnosis, Treatment, and Living with the Condition

OBJECTIVES: This study seeks to explore patients’ experience of living with newly diagnosed multiple myeloma (NDMM), focusing on their perceived unmet needs at diagnosis, treatment, and care.

METHODS: A 30-minute online survey amongst actively treated transplant eligible (T-e) and transplant ineligible (T-ie) NDMM patients from France, Germany, Italy, Russia, Spain, United Kingdom and United States was conducted (June - December 2021). Patients’ experiences of diagnosis and treatment initiation, the physical and psychological burden of living with NDMM and the perception of caregiver burden were documented. Responses were assessed on Numerical Rating Scales (NRS); Likert type scales, and the Eastern Cooperative Oncology Group (ECOG) performance status score. Descriptive statistics were performed. Informed consent was obtained.

RESULTS: 94 NDMM patients [60%, T-e; 40%, T-ie; age 59.9 years (mean)] completed the survey. At diagnosis, 95% were psychologically distressed; 39% felt in the worst mental health state possible (NRS); 86% were physically impacted (pain, 55%); 35% were unable to work or do light activities (ECOG). A quicker diagnosis, education on MM, and psychological support were key unmet needs. At treatment initiation, 60% felt involved in decision making. Once on treatment, 72% still felt psychological distress; 13% described their mental health state to be at its worst (NRS). However, 55% not accessed psychological support. 89% of patients remained physically impaired; 26% were unable to work or to do light activities (ECOG). 86% of patients reported at least one treatment unmet need (i.e. 60% tolerability,46%, quality of life impact). 75% of NDMM patients received support from family every day. 55% felt their caregiver was highly impacted (NRS) by their role; 23% accessed psychological support.

CONCLUSIONS: NDMM patients and caregivers are highly emotionally burdened by the disease. Quicker diagnosis, more tolerable treatment regimens, education and quality of life improvement, and psychological support for patients and caregivers are key unmet needs.